1. Pearson, Linda J. RN, FNP, FPMHNP, MSN, DNSc, Editor-in-Chief

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At the age of 80, my mother is dying. This profoundly sad time has also caused me tears of frustration during my mother's last few months. Her experience reflects many of the problems terminally ill patients face. As validated by Last Acts (, a national coalition to improve care near the end of life, most terminally ill patients do not receive adequate care.


Federal law regarding advanced directives (ADs), including living wills and power of attorney for health care, requires providers to inform all adult patients of their right to accept or refuse treatment. The ADs law is a good idea with great potential, but comes with many flaws and minimal positive impact.


For example, living wills often don't accurately reflect patients' expectations of receiving or not receiving life-sustaining technology. Although most health care providers inform patients of their rights to ADs, few consistently discuss and document their patients' wishes.


Complications of ADs

My mother's situation has brought me face to face with these and other problems. The oncologist talks to my mother exclusively in medical jargon, and confines their conversations to her blood, x-ray and thoracentesis test results. He will not refer my mother to a hospice program "because we have several more chemo drugs to try". And my father refuses to give up hope for a "total cure".


So my mother is forced to suffer the cruel ravages of chemotherapy without the supportive care that a hospice program could provide. She chooses to continue the toxic, debilitating therapy with extremely poor odds of success because her oncologist shies away from a realistic discussion of her prognosis, and her husband insists that she "do everything" for any type of remission, even in the face of long shot odds.


Addressing the Issues

I understand and forgive my father's refusal to allow my mother to stop the futile chemotherapy. But I am less forgiving toward her oncologist. One colleague told me "oncologists don't like to admit defeat. They tend to nurture the perception that death is an option". Below their breath, nurses have shared with me their belief that many oncologists fear the mention of death and hospice care because it is bad for business.


My mother's health care insurance does not utilize a case manager or primary care provider after an oncologist has taken the case. So while the public health nurses I have temporarily arranged are begging my mother's oncologist for a referral to the hospice program, the oncologist is brushing the suggestion aside.


Hospice programs are designed "to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments" ( Often, many family members and/or patients are not ready to relinquish all hope as part of their defense mechanism against grief. Perhaps the hospice could de-emphasize the "terminal" aspects of its program and instead advertise it as an intensive home-health support program for very ill patients.


End-of-Life Discussions

I have found help for facilitating conversations with my mother. Five Wishes ( an excellent document that meets state requirements in 35 states, and has helped my mother express all that she wants to have happen and done in her last months of life.


Additionally, Project Grace ( has an Advanced Care Plan Document that has helped my mother be specific in her choices using common end-of-life scenarios.


We need to get beyond the belief that death is the enemy to be fought at all costs. Death often happens in hospitals, away from loved ones, home comforts, and support. It is often delayed for a variety of reasons including a patient's willingness to relinquish control over his life's end, family members who want 'everything done', overzealous medics or emergency personnel who apply inappropriate procedures outside the patient's wishes, the practice of defensive medicine, and physicians who apply technology as a way to confront death.


Providers who hide behind a veneer of techno-slang do not console families or provide a good end to life. Dying patients want and need comfort items and analgesia, continuity of care, and our time as health care providers. Dying patients deserve a peaceful end to their lives. From my experiences both personally and professionally, many do not receive this.



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